Werdnig-Hoffmann disease (Spinal Muscular Atrophy type-I)

[Guest guest]

Dear all

 

Today a very good friend of mine got a dreadfull diagnosis on his 2

month old daughter. She is diagnosed with Werdnig-Hoffmann disease

(Spinal Muscular Atrophy type-I). A rare disease and untreatable by

western medicine and likely to be fatal within a year.

 

Though very unlikely I would like to put out a call to our community if

anybody is aware of a treatment for this disease or any treatment to

ease the course of this disease.

 

Any information on treatments or any reference to other sources of

information is very, very much welcomed.

 

Thank you

 

Alwin van Egmond

[Guest guest]

Dear Alwin,

 

I only found two references in the Chinese literature about the treatment of

SMA with Chinese medicine.

 

One is a more theoretical article that actually deals with wilting disorders

in general, but from the viewpoint of the eight extraordinary vessels. The

author thinks that analysis of wei syndromes through the qi qing ba mai can

be very useful not only theoretical but also in clinical practice. The

article is quite long and also discusses clinical analysis by using the five

viscera, and the triple burner.

 

The other article is a clinical outcome study, in which the author claims to

eventually cure 15 cases of SMA. However, the age range was 17-65yo, so this

article deals with adult SMA, which is much more benign than the infantile

variant of this type of disease.

The author used the burning mountain fire method on the following four sets

of points:

 

1. GV20, BL20, 23, GV4, KI3

2. CV17, 4, 6, SP6

3. Gv14, LI11, TE5, LI4, ST36

4. GB20, LI10, PC6, GB34, LIV3

 

Choose points from one set, and perform the burning mountain fire method on

all the points (I'm not sure if I understand the author's description of the

method completely- I copied another description of the same method from

another article at the bottom of this message). One AP treatment per day for

the first month, after that every two days. 20 treatments make one course of

treatment.

After 1-2 courses of treatment, all patients saw improvement. After 4

courses of treatment 5 cases were cured, after 6 courses 4 were cured, after

8 courses another 3 were cured, and after 10 courses the remaining three

were also cured.

 

I don't know if this technique can be adopted for infants. In Nanjing I have

studied with a doctor who specialized in neurological pediatric diseases

(although I never saw a baby in her clinic, only older children with, for

example, athetosis). She told me that her mentor lived in the south (I think

Guangzhou) and had people from all over the world come to him with their

children to get treatment.

 

Sorry, that's all the information I found. E-mail me if you would like to

read the articles (in Chinese).

 

Best,

 

Tom.

 

Burning Mountain fire (from an article by Yu Yong-Chang)

Once the needle has been inserted through the skin but remains at a

superficial level, rotate, lift and thrust the needle until the Qi is

obtained (throughout the manoeuvre the fingers and thumb grasp the handle of

the needle and do not let go until after the needle is withdrawn). Once the

Qi has been obtained, rotate the needle 9, 27 or 81 times. This procedure is

carried out at three consecutive depths (superficial, middle and deep).

After completing the procedure at the deep level, the needle is retained for

a second or so, then slowly withdrawn to the first (superficial) level and

the process repeated 9, 27 or 81 times. After the last manipulation at the

deep level, the needle should be retained without manipulation for 30

seconds and then withdrawn. The point should then be massaged to close the

hole.

 

 

 

 

 

----

 

Alwin van Egmond

16/12/2006 16:14:41

Chinese Medicine

Werdnig-Hoffmann disease (Spinal Muscular Atrophy type-I)

 

Dear all

 

Today a very good friend of mine got a dreadfull diagnosis on his 2

month old daughter. She is diagnosed with Werdnig-Hoffmann disease

(Spinal Muscular Atrophy type-I). A rare disease and untreatable by

western medicine and likely to be fatal within a year.

 

Though very unlikely I would like to put out a call to our community if

anybody is aware of a treatment for this disease or any treatment to

ease the course of this disease.

 

Any information on treatments or any reference to other sources of

information is very, very much welcomed.

 

Thank you

 

Alwin van Egmond